Monday, 27 November 2017

PH Awareness Week 2017

In this week I did a lot of raising awareness for Pulmonary Hypertension.

Day 1

I changed my profile picture

Day 2Understanding what Pulmonary Hypertension is

The main symptom of PH is breathlessness. This is the symptom that people will normally notice first. Other symptoms may include dizziness, feeling faint, swelling of the feet or ankles, and chest pain (particularly during exercise).

During periods of exercise, the heart beats more quickly to get more oxygen to the muscles. At the same time, the blood vessels carrying blood to the lungs (the pulmonary arteries) expand to allow more blood through. The pulmonary arteries do this by stretching slightly. In a person with PH, the walls of the pulmonary arteries are thicker, so are less able to stretch.

In a person with PH, because the pulmonary arteries are less able to stretch, the heart has to work harder to pump blood to the lungs. If the heart has to work harder than usual over a long period of time (months or years), it begins to work less effectively. http://www.phauk.org/what-is-ph/

Day 3

Living with Pulmonary Hypertension

Day 4Treatment for Pulmonary Hypertension

There is no single test to diagnose pulmonary hypertension (PH). Most people will have a number of tests before an accurate diagnosis of PH can be made. Many of these tests are used to find out whether there are other causes of the symptoms, or to assess if you have a condition that may be causing PH. Some of the tests are; Cardiac Catherisation, Echocardiagram, Lung Function, MRI scans, Walk Tests and many more. Though not everyone needs all these tests, it varies with each patient.

We are very lucky to have as many treatments for PH as there are at the moment. Clinical trials play a very important role in the development of new treatments for different diseases and conditions. Without clinical trials there would have been no developments in new treatments for PH.

The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to people with the rare disease, pulmonary hypertension (PH).

Set up in 2000, PHA UK has grown to a membership of over 3,500. The PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

• We support PH patients and their families to enjoy a better quality of life

• We work closely with healthcare professionals to improve time to diagnosis and treatment

• We lobby to ensure PH is on the political agenda

• We provide research grants to individuals, hospitals and specialist PH centres to improve the way PH is treated and managed.

• We organise our own training and provide educational grants to help healthcare professionals obtain the specialist skills required to treat people with PH

• We undertake a wide range of media activity to raise awareness of pulmonary hypertension

• We organise events for members with an emphasis on interaction, fun and education

• We provide members with an engaging quarterly magazine, encouraging them to share their own PH stories and feel part of a community

As well as supporting people living with PH, we also work to raise awareness of the condition. Pulmonary hypertension can severely affect a patient’s quality of life, but the condition is not widely understood in the UK and can often be mistaken for high blood pressure.

This is where the PHA UK comes in. We are committed to helping raise awareness of the condition among the general public, healthcare professionals, policy makers, funders, and politicians, to help improve the lives of people living with PH. http://www.phauk.org

Day 6

My 10th Anniversary PH Video

Day 7Thank youThank you to everyone who has followed this year’s PH Awareness Week. Thanks for the liking, the sharing and helping to raise awareness of Pulmonary Hypertension! It means so much to people like myself, who are battling with this rare disease every day and we will always hope that one day there will be a cure!

In the meantime, this isn’t goodbye! Please continue to follow my page and my blog to follow my fight against Pulmonary Hypertension and to continue to raise awareness. There are many ways to get involved and support PH and that’s by fundraising, PH lottery, easyfundraising or donating! http://www.phauk.org/get-involved-with-the-pha-uk/